Ethan Walmark

Gone are the days parents brought in sugar-laden, empty-calorie, cavity-inducing, full-on-carb treats to their child’s school for a birthday. However, even without all the sugary treats, this boy's birthday was still pretty sweet.

A special birthday celebration at school

In the place of birthday cupcakes, cookies and other confections, my school district has ushered in the politically correct era of “feed-the-brain-and-not-the-belly” mentality, which begat the “Parent/Guardian Birthday Book Read.”

My son, Ethan, loathes most dessert delicacies anyway, (DNA tests to prove he’s actually my biological son are pending) so the book is a nice change of pace.

A special present

Ethan’s birthday was Friday, Sept. 6, so Michael and I were invited to the classroom. Katelyn Kawejsza (pronounced: kah-way-zah) and Alissa Faucher (pronounced: foe-shay), Ethan’s new teacher and paraprofessional respectively, warmly greeted us when we arrived, as did Ethan. In anticipation of the day, Ethan previously told Michael and I that the book read would go as follows — “Daddy reads one page. Mommy reads one page. I [Ethan] read one page.”

Before we read the story, Ms. Kawejsza had the children (and us) sit in a circle as they do every day for “morning meeting.” When seated and quiet, Ms. Kawejsza brought out a small box with a bow, symbolic of a birthday present. She explained that the gift would pass from one child to the next, at which time the class would greet the child with the gift by his/her first name. In turn, the child with the gift then compliments the birthday child with a phrase that begins with “I notice you…” — and the compliment must focus on the child’s actions and behaviors, not his/her physical characteristics.

I notice you...

The first child barely finished the word “you” before tears welled in my eyes. These are some of the compliments Ethan’s classmates said about my son:

“I notice you…”

  • say hello to people when you see them in the hallway
  • are always quiet and listen when we have circle time
  • are always kind to people
  • are always happy
  • always have a smile on your face
  • help your friends on the playground
  • have the hottest mom, not only in this class, but in the entire school, and probably the entire town (OK, no one said that. But I’m sure it’s only because the kids aren’t allowed to comment on physical characteristics. That’s the story I’m sticking with.)

At this point, Miss Faucher gave me several tissues to wipe my eyes — and blow my nose in a most unladylike fashion (a Ziering family tradition) — and the compliment circle was only halfway complete. Any mother (parent) would swell with pride to know that her child makes such a positive, lasting impact on classmates. But, only the parent(s) of a special needs child can truly understand the daily mental, physical, financial and emotional effort it takes — by both parent and child — to undergo never-ending therapies, IEPs, PPTs and extracurricular activities, for a child to be accepted in the mainstream.

As noted author, speaker, cited expert and autism advocate Temple Grandin perfectly stated, “I am different, not less.” Ethan’s generation — a generation who bears witness to 1 in 50 peers diagnosed on the autism spectrum — understands he is different, but not less. What Ethan’s classmates don’t notice is how hard he (and other special needs children) works to assimilate into a typical classroom and typical society.

What they don't notice

Ethan Walmark

  • They don’t notice the countless hours Ethan spends in private therapies to become “just another kid” in the morning meeting circle.
  • They don’t notice that 15 minutes after an almost seven-hour school day (when most 7- and 8-year olds need a nap), Ethan is already at his first 45-minute private therapy session.
  • They don’t notice the hours Ethan has spent in speech therapy to get beyond four-word sentences, or to answer their “wh” questions, carry on a back and forth conversation or talk about things out of his comfort zone.
  • They don’t notice how many hours Ethan has spent at occupational therapy to look them directly in the eye, to bounce a basketball so he can play at recess, take turns so others won’t get frustrated , write their Valentine’s Day cards or tie his shoes.
  • They don’t notice that Ethan has logged more hours in a swimming pool than Michael Phelps to increase muscle control, extend his range of motion and gain endurance.
  • They don’t notice how his physical therapist takes him on the playground to teach him how to propel himself on the swings, walk up the stairs one foot at a time or lift weights for upper body strength.
  • They don’t notice that when they have play dates, Ethan will be at craniosacral therapy — a two hour round-trip excursion — an alternative therapy which helps regulate the flow of cerebrospinal fluid by using therapeutic touch to manipulate the synarthrodial joints of the cranium (Google it.).
  • They don’t notice his time spent with a music therapist who, through music, teaches him how to better socialize and communicate with others.
  • They don’t notice three-hour School of Rock band rehearsals, which take place after his 45-minute occupational therapy session, which takes place after his seven-hour school day, so he can assimilate with others through his musical gifts.
  • They don’t notice how many social stories Ethan reads to lessen the anxiety of new situations, or to explain what’s expected of him in different environments.
  • They don’t notice that he (sometimes) wears compression shirts on the hottest of days, because the light pressure calms his sensory system and gives him a sense of self/place.
  • They don’t notice that Ethan must always give an exhaustive 110 percent effort to become a part of their world, which by autism’s definition, is a world he finds innately uncomfortable.

But I notice these things. I notice them because I am his mother. Most of all, I notice that my son — through his hard work, empathy, intelligence, smile and music — will one day change the world for the better. And, I notice that he already has.

Image credit: Allison Ziering Walmark

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Comments

Comments on "I notice… you don’t have autism"

Allison Ziering Walmark September 29, 2013 | 9:53 AM

Nora, please find me at Allison Ziering Walmark on Facebook, and private message me. I really want to help you out!

Norah (again) September 24, 2013 | 6:19 AM

My son also can't walk up stairs on foot at a time to which a physical therapist said, 'well, isn't it just amazing he can walk up stairs at all?' Um, he has one below knee amputation so why wouldn't he be able to walk upstairs. I'm constantly told he does not need therapy because he 'does it well enough'...'really does he need to know how to 'swing'....grrr...sorry to be a downer...just feeling bitter

Norah September 24, 2013 | 6:16 AM

I'm feeling a bit sad and jealous after reading this article. My son was born with multiple missing limbs and a jaw difference, and can't do half the things her son can. BUT, he can not to this day get swim, or particularly asked for help in swinging on a swing, BECAUSE while almost every therapy program I've tried to access (and he is 10 years old now so there were a LOT) have amazing programs for autistic children, children with cerebral palasy, and many other differences but every single program I've applied to has said 'he is the first child with amputees we have worked with'. Shriners is great for equipment: prosthetics and how to use them; The best place I can find help for specifics has been 3-4 day 'camps' specific for amputees run by teens and adults with amputees. Thankfully, unfortunately, with the rise of war causalties my child HAS seen increased options in therapy: downside being that just recently I've been hearing 'well, we've never worked with a child amputee' instead of 'well, we are really only experienced with children with autism'.

Hillary September 22, 2013 | 8:02 AM

That made me cry a little bit. It was so sweet. I am awed by how much work your son (and you) put in to help him fit in and be happy. It is wonderful how much you help him and how much you are there for him.

Jen September 21, 2013 | 7:40 PM

You're right sweetie, they don't see it. But our guys are the most amazing guys, aren't they?!!! They work so dang hard, and they just want to please us so badly. They are the most beautiful creatures, we are so increadabley blessed, I feel so sorry for all the other parents who will never get to feel this extraordinary love, it's unexplainable. We are very fortunate. Please continue to use your gift of writing. Your little man is precious, like mine.

Stefanie Sacks September 20, 2013 | 7:03 AM

You are doing a great job I feel like that what a goal is for us to learn enough social skills so we can get by in the world .if you are allowed to do your own thing an everything is excused becuse you have autism. .becuse it not going to help u when u get older .i no some parents that excuse thing on the child behavior that no good an dont want them to deal with any bad thing that not the real world .i was tread like temple sometimes you. Have to suck it up an deal with it .an sometimes people aren't going to be nice to you .im HFA now not like temple .but your son will be better off in the long run :)

Elayne Lite September 19, 2013 | 8:07 PM

Allison, This is truly a beautiful article,written with understanding and love. You are a terrific Mom and Ethan is very fortunate to have parents who go the extra mile (100 miles) to give him all that he needs. He seems to be a happy child. He is certainly handsome (he looks like his dad) and extremely gifted. You get A plus for your writing skills.

mollie September 18, 2013 | 11:47 AM

Really enjoyed it! Very touching. I will be sending it to my sister-in-law/brother-in-law who have two sons with autism.

Suzanne Mullins September 18, 2013 | 9:28 AM

Brought tears to my eyes. You are right -- it's your best one yet!

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